Chronic Lyme Dos and Don'ts
By International Lyme and Associated Diseases Society & International Lyme and Associated Diseases Education Foundation
Chronic Lyme disease is an ongoing Borrelia burgdorferi infection that can involve any body system or tissue. The infection produces a wide range of symptoms and signs, which can be debilitating for some patients. Common symptoms include severe fatigue, migratory musculoskeletal pain, headaches, and impaired memory. Unfortunately, chronic Lyme disease is complex and often misunderstood, which means that many patients will struggle to obtain the care they need to regain their health. Every patient concerned about Lyme disease and tick-borne illness should know the following.
DO Protect Yourself Against Lyme Disease
Avoiding blacklegged tick bites is the first step in preventing chronic Lyme disease. Whenever a person is in a tick habitat, they should wear long sleeves and long pants, and tuck pants into socks. Treating clothes with permethrin (which remains effective for 2-6 weeks) and wearing a repellent containing DEET, picaridin, IR3535 or oil of lemon eucalyptus will also help to prevent tick bites. While in a tick habitat, check yourself for ticks frequently. Once home, always conduct a whole body check for ticks.
DON'T Assume You Can't Get Lyme Disease
Contrary to popular belief, Lyme disease is not just an East Coast problem. In the last ten years, blacklegged ticks have significantly expanded their range. In the US, these ticks inhabit 43 states and are found in half of the counties in those states. Blacklegged ticks are also native to Europe, northern Asia, northern Africa and South America. Blacklegged ticks prefer wooded or brushy areas and long grass; these habitats exist in rural and urban areas. Lyme isn’t only a summer problem: In some areas, ticks bite all year long.
DO Know the Symptoms and Signs of Lyme
Common symptoms of early Lyme disease include
- EM rash (80% are solid-colored, and less than 20% have a bull’s-eye appearance)
- Muscle and joint pain.
The non-rash symptoms are often described as a “summertime flu.” Some people may notice areas of numbness or tingling.
Once the infection extends beyond the skin, it can affect any system of the body, causing symptoms including:
- Debilitating fatigue
- Muscle pain
- Nerve pain and weakness
- Heart problems
- Psychiatric symptoms
- Difficulty with thinking, memory, language and math skills
- Problems with vision and hearing.
If you have been exposed to a tick habitat and you develop any of these symptoms, you should talk to your doctor right away.
DON'T Wait to see if you develop Lyme
If you've been bitten by a blacklegged tick, promptly taking prophylactic (preventive) antibiotics is the best way to prevent possible exposure to Borrelia burgdorferi from developing into a case of Lyme disease.
As described in ILADS’ 2014 Treatment Guidelines, 20 days of doxycycline is the preferred approach. Not all bites require doxycycline. If you’ve been bitten by a tick, talk to your provider to determine if prophylactic treatment is the right course for you.
DO Know How Difficult it is to Diagnose Lyme
Lyme is a complex disease that can be highly difficult to diagnose because symptoms are variable, lab tests aren’t always reliable, and Lyme can mimic other diseases. If you spend time in tick habitat or areas where Lyme disease and other tick-borne infections have been reported and develop symptoms of these infections, be sure to let your doctor know about your exposures.
A misdiagnosis during the early stages of Lyme disease may lead to delayed treatment and chronic symptoms which can be very difficult to treat.
DON'T Rely Solely on Lyme Tests for Diagnosis
When evaluating a person for Lyme disease, a physician should consider a patient’s
- Health history, and
- Exposure risks
Many patients with Lyme disease -- some authors report fifty percent -- receive a false negative result when they are tested for the infection. Widely-used tests look for antibodies in the blood, so testing too early, before the body has mounted an immune response, would produce a negative result. The antibody response can diminish over time in untreated infections so testing too late in disease may produce false negative results. So might testing after prophylactic antibiotic treatment. Widely-available tests are based on a single B. burgdorferi strain, which may increase the risk of false negative results in patients infected with other B. burgdorferi strains.
As a result, physicians who are experienced in recognizing Lyme disease may make a clinical diagnosis of Lyme disease and offer antibiotic treatment despite negative tests results.
DO Know Your Treatment Options
Work with your doctor to identify appropriate treatment options. This is especially important if your symptoms persist after your first course of antibiotics. As discussed in the ILADS guidelines, there are multiple options, including long-term antibiotic therapy, and the use of antibiotic combinations.
DON'T Wait to Start Treatment or End Too Early
If you are exhibiting symptoms of Lyme disease and are diagnosed with early Lyme, the infection requires immediate, effective treatment. For treatment of the EM rash, ILADS recommends 4-6 weeks of antibiotic treatment. In the experience of ILADS members, many patients will remain symptomatic or become progressively ill when antibiotics are stopped prematurely.
See the 2014 ILADS Treatment Guidelines.
Patients with chronic Lyme disease (both untreated and previously treated) require a careful, individualized approach to treatment, which may include extended courses of antibiotics.
DO Have Hope for Successful Outcomes
If you are diagnosed with Lyme disease or another tick-borne illness, you should consult a doctor trained in treating tick-borne illnesses. He or she will be able to direct effective treatment to make the most progress possible. Use our search tool to find a medical professional with experience with tick-borne diseases.
DON'T be Afraid to Seek out a Clinician with Experience in Treating Lyme Disease
Lyme disease is often called the "great imitator" because it mimics other conditions. Providers who are unfamiliar with tick-borne illnesses sometimes focus too narrowly on diagnosing and treating a single symptom. For example, a provider may diagnose knee pain as arthritis, and fail to place it in context of symptoms that add up to a diagnosis of Lyme disease. If your primary care physician is offering treatment for symptoms that could support a diagnosis of Lyme, and those treatments aren’t working, you may want to consult a physician who has experience treating Lyme and other tick-borne diseases.
It’s important to recognize that much is unknown about how to best treat Lyme disease. Because of that, doctors may differ over which antibiotics to use and the duration of therapy. If you are symptomatic and your doctor advises not to treat, or if symptoms recur or persist after treatment, you may want to consider a second opinion from a doctor experienced in treating tick-borne illnesses.